Ethical boundaries of human gene editing

Over fifty people attended a talk on human gene editing, as viewed from the perspective of Christian ethics, at a recent meeting held by Science and Faith in Norfolk.

Report by Patrick Richmond and Nick Brewin

Dr Alexander Massmann, from Cambridge University, explained that a new epoch in “genetic therapy” is now dawning thanks to the advent of CRISPR, a technique that makes it relatively easy to modify, add or delete specific genes.

Human gene editing already has medical applications, for example, to cure childhood leukaemia. Further advances are possible for genetic diseases like sickle-cell anaemia, haemophilia, beta-thalassaemia, or phenylketonuria. For other conditions, such as multiple sclerosis or muscular dystrophy, CRISPR-based treatments may not provide a cure, but they may help to alleviate the symptoms.

While Christians should support the development of such treatments for children and adults, significant ethical questions arise about the modification of early human embryos. The editing procedure is easier and more effective when an embryo is used, but the genetic changes are carried forward into future generations. This greatly increases the risk of unforeseen problems that cannot be controlled. In most countries, the implantation of modified embryos is currently illegal, or requires a special licence, but some people might want to change these regulations, especially as the technology is improved.

Dr Massmann noted that it is often possible to avoid heritable diseases simply by identifying the “healthy” embryos after in vitro fertilisation and by using only these embryos for implantation and development in the womb. This technique (Pre-implantation Genetic Diagnosis) would avoid the need for gene-editing, but not everyone thinks that it is ethical to apply this form of genetic selection and to dispose of the relatively unhealthy embryos.

Quite apart from using gene editing to control serious medical conditions, the CRISPR technique could, in principle be used to enhance relatively minor personal characteristics for example, changing height, hair-colour, improving memory or even intelligence. Do we want to encourage cosmetic gene modifications or “designer babies”?

The ethical questions raised by gene editing make us think more deeply about ourselves, our bodies and our values in society. For example, what do we mean by “well-being”? How do we deal with illness and disability? From a Christian perspective, good health is obviously important, as illustrated by the healing ministry of Jesus. On the other hand, the Apostle Paul emphasised that physical impairment and weakness does not necessarily imply a less meaningful life. Paul discerned God’s voice in the message, "My grace is sufficient for you, for my power is made perfect in weakness" (2 Corinthians 12:9).

We generally value and honour those who are fit and healthy, but Paul took pains to honour those who might otherwise be looked down upon. Paul argued that God was revealed in Jesus who himself was crucified. The cross provides a powerful illustration that traits that many people would consider meaningless, or even shameful, may in fact hold the secret of life. Thus, in the New Testament, we find that good health is honoured and valued, but it is not considered to be the only component of a meaningful life.

Furthermore, there have been many studies that asked people with disabilities and their families about the quality of life. A frequent response was that people with disability, as well as their families, are very satisfied with their lives. Perhaps this provides an ethical guideline for human gene editing. On the one hand, we should encourage health and physical well-being but, on the other hand, we should not assume that greater physical capabilities are necessary or sufficient for a worthwhile life. Thus, we should always strive to show solidarity and practical support for those with impairments and disabilities.

Following the talk, the discussion ranged widely. It illustrated how a constructive dialogue between genetics, medical science and the faith traditions can highlight a range of important social challenges that need to be explored.

At the next event organised by Science and Faith in Norfolk, Lizzie Henderson and Steph Bryant will share their experiences as members of the Youth and Schools Team, based at the Faraday Institute for Science and Religion in Cambridge. Their topic is “Exploring Science and Faith with Young People”. This meeting will take place on Monday 24th June (7.30 – 8.45 pm) at Trinity Meeting Place, Essex St., Norwich NR2 2BJ. All are welcome.